Qualitative analysis of factors affecting adherence to the phenylketonuria diet in adolescents.

PURPOSE/OBJECTIVE: Phenylketonuria (PKU) is an inborn error of metabolism that is primarily treated with a severely restricted, low-protein diet to prevent permanent neurological damage. Despite the recognition of the importance of strict dietary adherence in the prevention of intellectual impairment in individuals with PKU, apathy and attrition from diet, especially during adolescence, remain a threat to normal development in this population. This study's aim was to examine adolescents' perception of factors that encourage or inhibit their dietary adherence.

DESIGN

This was a qualitative study, with the authors using thematic analysis to interpret the findings.

SETTING

The study was conducted as part of a Metabolic Disorders Association conference.

SAMPLE

Eight adolescents with PKU were recruited through convenience sampling.

METHODS

A focus group was conducted with the adolescents to gather information about factors that encourage and discourage dietary adherence.

FINDINGS

Thematic analysis revealed that the adolescents encountered problems explaining the nature and food requirements of their condition to other people. Friends, family, and wanting to maintain "normal" cognitive abilities were identified as factors that encouraged dietary adherence.

CONCLUSION

Adolescents with PKU appear to share several barriers and incentives for maintaining the strict dietary regimen.

IMPLICATIONS

Considering such perceptions may aid future interventions aiming to reduce diet attrition rates among adolescents.